adventures in family, faith, and Down syndrome

When you can’t hold all the babies you want

by Maggie on September 3, 2014

In the moments following Tessa’s birth, after the doctors and nurses left and it was just John, my mom, and I, we processed.

I write to you today having just had a “conversation” with another blogger whose daughter also has special needs. I want to explain to her – and you – why my reaction to a life-altering diagnosis was fairly mundane. While there are many, many life reasons that are a part of it, two stick out most prominently.

My mom hadn’t been in the room when Tessa was born and diagnosed. She had just shown up to the hospital to bring John some lunch and to keep me company while we waited for the baby. While I believe that she knew the baby had arrived before she entered, she essentially walked into our strange post-birth vortex on accident. I don’t remember telling her about Tessa or Down syndrome or anything else when she arrived. Maybe she remembers those moments, and maybe someday I’ll get her to share them with all of us, but having her there was one of the catalysts for just moving forward. Soon there would be other family arriving to meet our girl and I sure as hell wasn’t going to have a pity party after I had just given birth.

Besides (and probably more importantly), the road to Tessa was not smooth. When couples set out to have a family, nobody tells them how hard it can be to get the family that they expect. It’s hard for me to not feel envious that for some people, the “having a baby” part is so easy… especially when they take it for granted. For us, it has not been so.

Our first baby was not planned. We were set to head off on a three week road trip and while packing, it dawned on me that I hadn’t had a period in… awhile. I took a test, it was positive, and we freaked out. We told our families. We bought a little AC/DC onesie. We had an ultrasound and saw its little heartbeat. A week later, after another ultrasound, we learned that the baby did not survive. Nine weeks in the womb. My body did not naturally miscarry, so a D&C followed soon after.

Next was Ellie. We know how that turned out. She is wild. (And, currently involved in quite the love triangle at daycare. Good Lord.)

We planned the next baby for a time that was going to be convenient for us (or so we thought). It took a couple months, but soon there was another positive test. In an attempt to calm my nerves, my doctor let me have blood draws to check my hormone levels. They didn’t behave as they should. It was not looking good. I carried that wee one for 10 weeks before we had official confirmation that she would never be born.

Genetic tests following both of my D&Cs found no abnormalities in either child.

I carry those babies around in my heart and think of them most days. Mostly, I imagine that a woman who died before having children might be holding them in Heaven. Maybe that’s crazy, but it helps.

John’s reaction to Down syndrome was more typical. He mourned the baby that we had planned to get but didn’t come. He worried from the moment she was diagnosed. He wondered what kind of life we would all have. I’m certain that my own attitude made him feel badly about his reaction.

If you are struggling with your child’s diagnosis, please know that you are not alone. His reaction wasn’t wrong and neither is yours.

In a moment of sheer panic, John turned to me and asked how I could possibly be fine with “all of this.” My response was simply that when you don’t get to hold all of your babies, the ones that do make it just feel even more miraculous.

That is why I can take this in stride. Tessa’s very existence on this planet is something that not all babies will get to experience. I am so desperately thankful that I have been able to hold and tickle and kiss this little being. That is all. Because we don’t always get to hold all the babies that we want to.

8 responses to “When you can’t hold all the babies you want”

Thank you! I remember the social worker saying to me that many parents of special needs kids feel badly about how they initially react. I know I am going to have hard times and happy times in the future, but thank you for understanding and not letting me feel bad because I wasn’t on board with the whole thing straight away. I am feeling better and better as each week passes and so excited about bringing the Peanut home to enjoy all those moments. I’m sorry you had to have the pain of losing those babies. Tessa and Allie are lucky girls to have you as their Mom.

I’m just now catching up. I didn’t know about your miscarriages. I am so sorry. Those babies we lose will always be in our hearts. What a beautiful perspective you have been given throughout the losses. Hugs!!!!!

I think men tend to have a very black-and-white outlook about pregnancy and babies, etc., Because they aren’t the carriers, and they don’t necessarily always hear from their friends about What Can Go Wrong When Trying To Conceive/While Being Pregnant/During Delivery/After Birth, they really have no concept about what a complicated process it all is.

My boyfriend echoed pretty much the same sentiment when Peanut was diagnosed. He did NOT want a child with Down Syndrome, and wondered what kind of life she would have…I was just as scared and worried as he was, but as her mother, I knew – I KNEW, that she was going to have the Best Life Possible.

And that’s all that mattered to me.

I’m sorry to hear about your miscarriages. It must be so devastating to be over-the-moon about something that eventually doesn’t come to pass… The girls are beautiful, Maggie. I smile every time you post pics of them. I’m sure your little angel-babies are smiling, too, somewhere from heaven.

^ I’m not a big heaven-hell-religious person, but I *do* believe that babies’ souls go someplace wonderful when they leave us. ❤

Thanks. 🙂 Isn’t it odd how men can feel so removed from the whole pregnancy aspect of having a child? I would always be annoyed when John showed so little interest in all of the changes that I was feeling… I wanted him to feel that connection as soon as I did and I just don’t know that it’s a physical possibility!